ABSTRACT
Introduction: Myotonic dystrophy type 1 (DM1) is related to muscle weakness, impaired balance, and a high risk of falls resulting in decreased quality of life and social participation. Indeed, DM1 is considered as a model of premature aging. However, the Covid-19 pandemic has exacerbated these health problems by decreasing the access to rehabilitation services and significantly decrease volunteer total weekly physical activity (PA) level. A pragmatic tool: PACE (Promoting Autonomy through exer-CisE), which has been developed to allow safe and adapted physical activity (APA) practice in older adults at home, could be a solution to counter physical deficiencies and lockdown restrictions in DM1 population. Objectives: 1. To adapt the PACE tool (decisional tree related to 35 APA programs) for the DM1 population (Pace-DM1 tool);2. To evaluate if assessing functional and muscular capacity in remote mode is feasible and valid in the DM1 population compared to in person modality;3. To evaluate the acceptability, feasibility and usability of implementing the PACE-DM1 tool for the health professionals and the patients. Methods: O-1: Two patient-partners, 3 participants who will experience the PACE-DM1 APA program, 2 health professionals from the Neuromuscular Disease Clinic of Jonquière (NMC), 1 NMC manager and 3 researchers were recruited to adapt the PACE tools using a co-creation design. O-2: Participants are assessing functional and muscular capacity [Time Up and Go, 30sec. chair stand test, 5 reps of sit-to-stand, 4-meter gait speed, balance and functional reach test] per and post-intervention (12 weeks) in remote (zoom) and in-person methods. O-3: After co-creation meetings, health professional were asked to evaluate the acceptability (satisfaction assessed via Likert scales;semi-opened questions), usability (System Usability Scale questionnaire) and feasibility (adherence, recruitment rate, etc.) of the PACE-DM1 tool. Results: First, co-creation meetings allowed us to adapt PACE tool (e.g. decisional tree cut points) for DM1 participants. Health professionals found PACE-DM1 tool exercises safe and adapted to the physical deficiencies of the DM1 population. Our preliminary data (n=2) using the adapted decisional tree showed similar results between inperson and remote assessment. More precisely, both assessment modality identified the same physical deficiencies (lower limb cardio-muscular, trunk mobility and stability, and balance) and prescribed the same program difficulty (out of a possible 5 levels). In the pre-intervention phase, implementing the PACE-DM1 tool was considered acceptable, usable and feasible for health professionals. Conclusion: Preliminary results demonstrate that an APA pragmatic, easy-to-use and adapted tool is implementable to prevent care trajectory of people with DM1. Nevertheless, these promising results need to be confirmed and validated with a larger sample.
ABSTRACT
BACKGROUND Efforts are ongoing to raise awareness of medication harms and deprescribing among Canadian older adults. Sequential population- based surveys can be used to track progress and identify future priorities. METHODS A repeat population-based telephone survey was conducted from a sampling frame of all listed household numbers in Canada, called at random. Eligible respondents were men or women aged 65 years and older who spoke English or French. Survey questions included 1) awareness of the term deprescribing, 2) knowledge of harmful effects of medications including sleeping pills and gastric acid suppressants, and 3) initiation of a deprescribing conversation with a healthcare provider. Data were analyzed using descriptive statistics with 95% confidence intervals (CI), associations determined with logistic regression, and 2016 and 2020 data compared using Chi-square tests. RESULTS Between September and November 2020, 43,959 households were contacted, 19,001 were ineligible, 6749 answered and 2316 (34%) met eligibility criteria and consented to participate. Respondents had a mean age of 74.4 ± 7.2 (range 65-104), 63.8% (95%CI 61.8-65.8%) were female and 21.2% (95%CI 19.5-22.9) completed the survey in French. Compared to 2016 survey results, awareness of the term “deprescribing” increased from 6.9% to 8.2% (p=0.066). The proportion of respondents who were aware that some medications could be harmful decreased from 65.2% to 58.6% (p<0.001), and only 38.2% initiated a deprescribing conversation with a healthcare provider compared to 41.8% in 2016 (p=0.35). Awareness of the term “deprescribing” or medication-related harm was persistently associated with patient-initiated deprescribing conversations (odds ratio [OR] 1.40 [95%CI 1.04-1.88], OR 2.14 [95%CI 1.78-2.56] respectively). CONCLUSION Despite slow progress and interruptions by the COVID-19 pandemic, there is value in educating older adults about medication harms in order to promote patient-initiated deprescribing conversations.